What Research Is There?

Short answer: There's very little. Almost everything we know about neurodivergence comes from white people in high-income countries, yet most neurodivergent people live in low- and middle-income countries and are not white. Social media is a much better place to look for lived experiences of non-white neurodivergent people than academic research or similar published work, but it still misses out huge swathes of neurodivergent people's lives and experiences.

Who Am I To Write This?

I am a multi-neurodivergent, queer, white-passing, anglophone sex and relationship therapist in private practice and a researcher. I am multicultural both in terms of the diverse ethnicities of my parents and their socio-cultural backgrounds and the countries and cultures I have lived in. I acknowledge that some of these identities accrue privileges that I haven't earned and are often invisible to those who hold them while simultaneously creating barriers for those who don't. These identities form and inform who I am and how I practice as a therapist.

As a teenager in the 90s, I avidly devoured the writings of Homi Bhabha and bell hooks, naively assuming that greater representation was just around the corner and that a more equitable socio-political discourse would make for a more just and fair global society. A few decades later, we are perfectly placed to assess how (in)effective many of these equality and diversity policies really were, in particular for neurodivergent people in the global south.

What Do We Know?

Although there is limited statistical data available on neurodivergent populations, we do have some estimates on its prevalence. For now, let's just look at ADHD. 

Globally, in 2020, the prevalence of persistent adult ADHD, which means it was diagnosed in childhood and persists in adulthood, was 2.6%. In contrast, symptomatic adult ADHD, what is commonly called ‘late’ or ‘adult’ diagnosis, was 6.8%, translating to roughly 140 million and 366 million adults, respectively (Song et al.; 2021). However, even among academic publications, prevalence estimates can vary significantly.

One study found that in Arab countries, ADHD prevalence ranged between 0.5 and 19.6% (Alhraiwil et al., 2015). The comparable data in Mainland China, Hong Kong, and Taiwan were 6.5%, 6.4%, and 4.2%, respectively, with a pooled estimate of 6.3% (Liu et al., 2018). In a Nigerian study on childhood ADHD, the authors noted that in other African countries, “such as South Africa, Democratic Republic of Congo, or Ethiopia, the prevalence of ADHD has been reported to vary from 5.4% to 8.7%” (Chinwa et al., 2014). Another African study of ADHD prevalence in children and adolescents reported a pooled prevalence of 7.5% (Ayano et al., 2020).

While geography is not seen as a key factor in prevalence variability, evidence suggests that adult ADHD is higher in high and upper-middle-income countries, roughly 3%, compared with low and lower-middle-income countries, around 1.4% (Popit et al., 2024). All that to say, even with ADHD, which is relatively widely studied, how prevalent it is, and therefore how many people actually have it, is still widely debated. 

What's The Problem?

Even if you’re a stats nerd (like me!), reading that might leave you feeling puzzled or even depressed. The majority of quantitative and qualitative studies cited in this chapter largely describe participants in terms of age, sex, gender, and sexuality, with rarely any mention of culture, first language, or ethnicity. So much so that gathering suitable content proved difficult for the very reason that there is so little research available.

Most neurodivergent research is conducted on children and young people, with 90% of the world’s children and adolescents living in low- and middle-income countries, yet only 10% of research is performed there (Franz et al., 2017).

In a recent review of research on the psychosocial consequences of ADHD in women, of the original 21,123 papers found, 8% (1782) were not in English (Kelly et al., 2024). That’s almost two thousand papers that were researched and published but excluded from that study because they were not written in English. Not only are non-anglophone populations being studied less, but even when they are, most anglophone meta-analyses and systematic reviews don’t take these publications into account. 

 So What's The Problem Exactly?

Put simply, almost everything we know about neurodivergence comes from white, rich anglophone people researching other white, rich, anglophone people. More specifically, until the last few years, it’s largely been funded and conducted by white men in high-income countries.

This article aims to shine a cultural light on this situation and to reveal the epistemic injustice of this unearned privilege of white, anglophone, neurodivergent research. It also highlights the need to recalibrate our understandings of what it is to be neurodivergent, with an active emphasis on neuro-affirmative, anti-racist, and anti-oppressive approaches. 

If this topic resonates with you, you might also be interested in our reflections on why representation by lived experience matters in research, such as in Trans Research by Trans & Non-binary Researchers, or how neurodivergent content creators are reshaping conversations around sex, sexuality, and relationships. Both pieces continue this important conversation about centring diverse voices and lived realities in spaces where they have too often been overlooked.